John Elder Robison on neuro-psychological testing

John Elder Robison recently wrote in his blog Look me in the eye about the neuro-psychological diagnosis of Autism Spectrum conditions, and how he feels this must inevitably be a positive step for those on the spectrum. He’s since followed this article up with another, that explains how in light of comments that he’s received he can see that some people can take negative things from the experience.

I think that John has great insight into his condition, and hearing the point of view of someone else with a similar diagnosis to myself is proving to be extremely useful, as it allowing me to make connections with my own symptoms.

A couple of points in the two articles really stood out for me, and I thought I’d expand on them here.

In his original article, John says:

There are some who say, “There’s no such thing as normal!” To those people, every single kid has a diagnosis waiting to be found. I don’t know that I fully agree with that, but I do think knowledge is power, and the more you know about yourself, the better off you are.

I agree completely.

I’ve always known that I was “different” from my peers, and in that sense I’m not normal. My wife has said to me recently that there is no such thing as normal, so John’s words struck a chord with me. My wife’s point of view is perhaps the opposite of Johns, however. By “no such thing as normal”, my wife means to say that no-one needs a diagnosis – you are who you are. She sees the label of not being normal as a negative thing, when in the end everyone is unique.

Whilst I understand why she feels this, I think she misses the point – it’s true that everyone is unique, but if you look at people in general then they tend to behave and react in broadly the same ways as each other. here are countless unspoken rules about how human interaction works, for instance. I often don’t fit this mould, and in that sense I’m definitely “different”, or if you prefer, “not normal”. To me the label is simply fact, and not something with either positive or negative meaning.

This is important to me, because if I considered myself to be normal, then I couldn’t possibly be on this road of self-discovery on which I now find myself. I know and appreciate that I’m different to the norm, and I’m keen to discover and understand the many subtle ways in which I do differ. Only when I have done this will I have the knowledge I need to make changes in my life that improve it and broaden my horizons.

Knowledge really is power.

In his follow-up article, John says:

When I wrote my original post, I thought how much diagnosis meant to me by helping me understand exactly how my mind differed from other minds around me. For example, the simple insight that I miss nonverbal cues was life-changing. I seized upon the specific behavioral issues and set about constructing a better life. It worked. Words cannot express how much better my life is, thanks to the self-knowledge I’ve gained since learning about my Asperger’s.

For some other people, it does not work that way because they become sidetracked by preconceived notions about “having a diagnosis.” Instead of looking at their own specific issues, they look at broad statistics associated with the diagnosis. They see phrases like, 32% can’t live independently, or 66% never get married and have a family. They become trapped in generalities rather than focusing on specific issues to make their own lives better. They interpret those general statistics as a prediction for their own future, when it’s nothing of the sort.

This sums up brilliantly my wife’s major worry about my investigation of AS. She worries that I will get caught up in the general statistics surrounding the condition, and that it’ll just drag me down until I become one of the statistics. She feels this way because the sort of statistics John mentions above were amongst the first things I found when I started researching AS on the Internet. I spent some time explaining them to her, and she can’t forget them.

There is no getting away from the fact that some of these figures are devastating to take in when you first realise you have AS. It’s easy to see how they can be devastating to loved ones too. I think it’s important to note, however, that I’ve proven throughout my adult life that I can live independently, and I have managed to find myself a wife and have two kids, so the negative aspects of these statistics don’t apply to me personally.

There’s another reason why my wife worries about me falling foul of the gloom of generalities. It’s because I have no swift answers for her. Investigating AS, and thus my differences from the norm has become one of my Special Interests, and as such it consumes a good deal of my spare time. My wife can see this, but she can’t see much in the way of answers or conclusions being reached. I’ve been on this road for four or five months now, and I’m still researching. This worries my wife, perhaps understandably.

I feel, however that I make progress almost every day. I focus on small things at a time, and then try and jot down my thoughts in this blog. Each little connection feels like another piece in the large jigsaw that describes my life. I hope that as time passes my articles here will form something of an encyclopedia of my understanding of AS, and thus my understanding of myself. In time I hope it will start to paint picures of how I’ve changed too – how I’ve been able to improve areas of my life due to the insight I’ve found.

I’ve not got a formal diagnosis, but I didn’t need one to start my journey. An informal self-diagnosis was enough to set me on my own personal road. Does that mean that I’ll never feel the need to get formally diagnosed? Only time will tell.

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